On Saturday night I went to a screening of the documentary “The Punk Singer” about Kathleen Hanna of the bands Bikini Kill and Le Tigre. I knew little about Hanna other than that she gave Kurt Cobain the line “Smells Like Teen Spirit”, something I am quite embarressed about now. I only went because the screening was put on by the great Karen Pickering, but I loved it. Despite what I am going to say below, I would encourage everyone to see this film – a great work of art about a truly inspirational woman.

For most of the film the only criticism I had was that they didn’t tell us who some of the people being interviewed were, or only put their names up briefly. I’d have liked to see some things explored in more depth, but there wasn’t a lot that could be cut to make way for this.

However, the last ten minutes are a differerent story. SPOILER WARNING for anyone who has not seen the film.

The film starts with a question about why Hanna suddenly stopped touring in 2005. This is kept a mystery for a while, but then you learn that she got sick. However, the nature of the illness is kept a mystery for quite a bit longer – appropriately because for 5 years Hanna’s illness was either dismissed or misdiagnosed by the establishment.

Eventually the film reports that Hanna was diagnosed with Chronic Lyme Disease. She is shown taking large doses of antibiotics for the disease and rages not only against those who deny the sexual assaults she has experienced, but also her sickness. The film unquestioningly backs up this diagnosis, quoting statistics about how common Lyme’s disease is.

The problem is that the existence of Chronic Lyme’s disease is a scientific battleground, and one that interacts in strange ways with other scientific questions that have become intertwined with political debates and conspiracy theories.

I want to make one thing very clear. I do not for a moment doubt that Hanna is sick, and that this is predominantly a physical disease. Any suggestion that she is malingering is too offensive for words, and I can see not the slightest reason to think the condition is psychosomatic. However, the fact that she has a disease does not mean she necessarily has the one with which she has been diagnosed, particularly when you consider that there are doctors who will pretty much diagnose anyone who walks into their office and complains of a toothache with Chronic Lyme’s Disease.

Since Lyme’s Disease is primarily an American phenomenon I’m not fully up to speed on it, but anything that happens in the US has implications here. There are plenty of sources if you want to follow the debate in more detail, Wikipedia a start, but here is my summary.

Acute Lyme Disease is a bacterial infection spread by tics in the northern hemisphere. It has a bunch of nasty symptoms, but can be treated with antibiotics if diagnosed. AFAIK no one questions its existence.

Chronic Lyme Disease is a different matter. Some doctors believe that inadequate treatment of Lyme Disease when it first hits can lead to a range of fairly non-specific but often serious symptoms including extreme fatigue, joint pain, inability to concentrate and nausea. They prescribe large doses of antibiotics in the belief this will remove the bacterium from the system, and with it the effects.

Most medical authorities, including the National Institutes for Health, state that while some patients who have taken antibiotics for acute disease may be left with “post-treatment Lyme Disease syndrome” that additional doses of antibiotics will not help. Moreover, they dispute that the majority of people diagnosed with Chronic Lyme Disease have anything of the sort – in many cases there is no evidence these people were ever infected with the bacteria that causes Lyme Disease, but certain doctors don’t see that as any reason not to diagnose them or prescribe antibiotics.

The Chronic Lyme Disease advocates have their moderate and extreeme wing. The extreme wing are clearly dangerous nutters who share the same approach as Global Warming Deniers, 911 “truthers”, people who believe NASA faked the moon landing and such like. Often they are actually the same people. They are getting in the way of an accurate diagnosis, let alone a cure, for whatever disease or diseases are affecting most of the people they claim are infected. By encouraging the abuse of antibiotics they are also hastening the day when these drugs will be no use against the diseases they still do work against. Their allegations that senior doctors are suppressing the evidence on this condition as part of some weird payola scheme is as offensive as it is absurd.

The existence of extremists does not, however, mean that the moderates are semi-crazy. For all I know the moderates are right and the medical establishment is wrong. It’s happened before, and although not nearly as common as people like to think, it will happen again.

Hanna really did have Acute Lyme Disease. Moreover, as someone who has actually been tested for a bunch of other things with nothing being found, she is a far more likely case than the people who get swept up in the enthusiasts’ net before anything else can even be assessed. So I’m quite open to the possibility that this is really what she has. I hope so, because the world needs such an amazing person well, and this would offer a relatively straightforward treatment.

Nevertheless, I can’t help but worry about a documentary that will undoubtedly send hundreds, maybe thousands, of people with symptoms overlapping with Hanna’s straight into the arms of the Lyme’s Disease advocates, including the crazy wing.

For all this, I’d really encourage people to see the film. Something that only gets a mention in the last ten minutes should not discredit the entire documentary. The more people who know about Hanna’s politics and courage and wit and tactical nous the better. But as one of the few people in a position to express concerns on this point, I feel it is my duty to raise them, and I do hope that I can discourage anyone from thinking “gee that sounds like me. I must have Lyme’s Disease as well.”

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About Stephen Luntz

I am a science journalist, specialising in Australian and New Zealand research across all fields of science. My book, Forensics, Fossils and Fruitbats: A Field Guide to Australian Scientists is out now through CSIRO Publishing. I am also a professional returning officer for non-government organisations. I'm very politically active, but generally try to restrict this blog to scientific matters.

One Response to The Singer and the Science

I forget its name but my mother had a huge medical tome. I stopped consulting it in the 1950s and am unsure whether it listed Lyme’s disease (acute, chronic or other) but it did describe the symptoms of a huge number of maladies in great and graphic detail. I would have loved to have concluded that I had Lyme’s upon consulting it while feeling poorly. However, I was invariably led to conclude that I had contracted syphilis, which is more than a little surprising and disconcerting when your age is single digit. Some years later Mum said: “I didn’t look at that bloody book at all after a year – no matter what my symptoms were it kept trying to tell me I had syphilis!”